User involvement in a study to find out what matters to teenagers living with dyspraxia

2012 Conference

Abstract:
The aim of this project was to find out how life is experienced by teenagers who have dyspraxia, a disorder of the organisation of movement, thought, perception and sometimes speech. Previous research has focused on younger children and although there is evidence that difficulties associated with dyspraxia often continue into adulthood, very little is known about how dyspraxia affects people during their teenage years. The study involved a series of interviews carried out by the researcher with a group of teenagers with dyspraxia over the course of two years using a research approach known as interpretative phenomenological analysis.

This presentation describes the involvement of a group of older teenagers/young adults with dyspraxia who acted as a “reference group” for the project. Their role was to give advice about making the participants felt safe enough to share their stories; suggesting questions that could be asked; and adding an “insider’s perspective” to help the researcher analyse the interviews. This presentation will use a combination of presentation, discussion and film to illustrate the challenges and benefits of involving users in a qualitative research project from the perspective of the researcher and reference group members, and to describe how the project will benefit teenagers with dyspraxia.

“User involvement” in a study to find out what matters to teenagers living with dyspraxia